The meaning of advocacy

Jeff Katz


One of the first, and in retrospect most important, lessons that Karen and I learned, way back when we first met Phyllis Kupperman, was “be Nate’s advocate.” We were new to the world of autism and hyperlexia, and, besides having to become amateur speech therapists and twice-weekly visitors to the Center for Speech and Language Disorders, now we had to become “advocates.” What did it mean?

No doubt, it means different things to different people. Perhaps some interpret it this way:

“Look, my child is no different from yours. Don’t call him/her autistic, don’t label him/her as someone with special needs.” That tack is usually accompanied by much yelling.

Or this:

“I’m sorry, I’m sorry. He/she doesn’t mean to be disruptive.” This is often part of a strategy that involves taking your child away from the scene of the incident, avoiding embarrassment the top priority.

Here’s what we did: always, always, make sure that Nate’s improvement was addressed first and foremost. I can recall the first school meeting in Lincolnshire, IL when labeling Nate autistic was put on the table. Some parents genuinely recoil at that label. It hurt, sure, but what did it matter if, by categorizing Nate as such, he would get the services and extra help he needed to succeed. We asked questions regarding privacy, and making sure his personal information was not fair game, and the answers were satisfactory.

Would we have changed our acceptance of the label if the answers weren’t good enough? Probably not, because what he received as a result of the autism tag was what he needed. Our damaged feelings were inconsequential compared to the big picture of helping Nate. We always saw ourselves as partners with the school in the grand cause that is Nate Katz; we were never adversaries.

I went through a transformation when Nate took, in effect, the same math course for three years straight. I was a solid math student and was upset that Nate was, except for a few units here and there, subjected to identical material in grades 6-8. The epiphany, my V-8 slap in the head moment, came unexpectedly, but it came. Nate’s stagnant math career was of no consequence to his overall development. It was a problem for me and another adjustment of expectations. I look back at that as an important moment of separating my needs from Nate’s

Even now, we are fighting the good fight. As a recent post noted, Nate has a new test reader at SUNY-Cobleskill. He got one bad grade and we’re unsure on the other. Nate puts a lot of effort into studying, but he may get anywhere from 0 to 100 (and has). All we care about is that he is given the best chance at showing his skills to the best of his ability. We’re always in the process of making that happen.

Look, everyone meets their challenges in different way. I’m not suggesting your way is wrong, and ours is right. You can only do what you’re capable of. Yet, at the core, every parent of an autistic child does share the common goal: do what’s right for their son/daughter and get the most out of them. Keeping that goal in the forefront and making sure all your actions, whether at school or socially, are aimed at achieving that goal, will lead you all to a better place, no matter what tactic you take.

From Mission of Complex

To share your personal stories of how autism has affected your life, your family's struggles and triumphs, email them to info@autismsupportnetwork.com to have them shared here


Related Articles


Top 10 terrific traits of autistic people

If you're sick of hearing about all the "deficits" challenging people on the autism spectrum, join the club. B ..

read more

To Russia with love?

As a mother of an adopted child and a child advocate, I've received numerous emails and phone calls asking me ..

read more

Stream of consciousness

The torrent of words that come out of Nate’s mouth every day, all day, is a disconnected series of cartoon h ..

read more

Our Support Community


Join our free support community and connect with thousands of other families and individuals touched by ASD. Find out what’s working for others, coping strategies, and life guides from others living what you’re going through now. Click here to join for free!

Resources in Your Area

Looking for autism resources nearby? Check our listings for professionals and services that might help.

Post your services | Help out in general

Events


Miracle Wonderland with Project You
Brooklyn, NY - United States
Dec-16-2017 - 01:00 pm
This winter we are hosting a very special holiday gala for special needs children at Borough Hall on December 16, 2017 at 1pm - 4pm. Our vision is to create a magical Mir ..
Go to Event site

view all events